What Is HD?

Huntington’s disease (HD) is a fatal genetic disorder that causes the progressive breakdown of nerve cells in the brain. It deteriorates a person’s physical and mental abilities usually during their prime working years and has no cure.

Find Help

Locate HDSA Chapters and Affiliates, Support Groups, Social Workers, and Centers of Excellence in your area as well as additional local medical, legal, social, and therapeutic resources for people with HD and their families.

HD Research

Since 1999, the Huntington’s Disease Society of America has committed more than $20 million to fund research, with the goal of finding effective treatments to slow Huntington’s disease. Our research efforts have helped to increase the number of scientists working on HD and have shed light on many of the complex biological mechanisms involved.

Healthcare Professional resources

This section includes online courses for physicians, social workers and therapists who care for people with HD at the local level. Courses deal with cognitive, physical, therapeutic, technological and legal HD issues among other topics. This section also includes reference materials in video and PDF format for Social Workers on HD issues listed by varied categories.

GET INVOLVED

When Marjorie Guthrie founded our organization in 1967, her vow was to “do something” about this devastating disease. Today we continue her legacy by bringing together the entire community to provide help and hope to all families affected by Huntington’s disease. Listed here are some of the ways you can get involved in the fight against HD.

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MeetDave & Susie

I’m Dave, she’s Susie. Together we’re known in the HD community just as “Dave & Susie,” no last name. We’re not sure what happened to our last name. We are sure of our purpose: to help other families cope with a disease that knows no cure or treatment. We met on the Hunt-Dis on-line support group. Both of us had become active in our local state chapters of HDSA: Susie, in Oklahoma, and me in Illinois. Susie lost her husband, Bud, in 1999. I lost my wife, Paula, in 2004.

We met face-to-face for the first time at the Orlando National Convention in 2000. Several members of Hunt-Dis thought it would be fun to put our email addresses with a face. For the next two years, we kept in touch, and in 2002, Susie agreed to help care for my wife, Paula, as Paula had reached the “end” stage of HD. Susie and Paula hit it off from the first time they met as both were nurses. While I worked during the day, Susie cared for my wife. When Susie worked her evening shift at the hospital, I cared for my wife with my 4 children. After Paula’s death, in 2004, Susie and I got married at the Atlanta National Convention in 2005.

We decided to start a Walk in 2005. I thought we’d be lucky if we grossed $1500.00. Susie was more optimistic and thought we’d gross around $5,000.00. Little did we know that the first walk for HD in Illinois would gross over $18,000.00! Over the past 8 years, the Illinois Chapter TEAM HOPE-Walk has grossed $375,000.00. Susie and I are at our best when we are talking HD to other families, the public, and to health professionals. At Susie’s hospital, when they admit a person with HD, they call it “Susie’s disease.” Both doctors and nurses consult with her about care for an HD patient. I love to help train nursing homes how to care for HD patients. We host a support group for the Illinois Chapter. While doing these things we also care for Susie’s oldest son, Bob, who tested positive for HD in 2002. We are happiest when we can help another family cope with the disease that brought us together.

We’ve never lost hope that a cure or treatment will be found. We will continue to maintain that hope until the cure is finally found!